Further Into Adulthood

This is the fifth in a blog series on Epidermolysis Bullosa (EB) as part of EB Awareness Week (October 25-31).

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Following the demise of my first serious relationship, I figured honesty was still the best policy with those I had dated. With the first potentiality, however, intimacy was not an option, for he feared injuring me due to my EB. I was crushed. My worst dating fear had come true. I reverted back to my “Don’t ask, don’t tell” personal policy.

The following April, I had no choice but to tell.

My roommate and I had some friends over for dinner and beer. Around midnight, I tripped on an air mattress we had on the floor, fell against the sofa and completely dislocated my left knee. I landed, stuck between the sofa and the air mattress, on top of the feet of one of our guests. We called an ambulance and for the next three hours, he and I talked about the wonderful time we were having. Though the ambulance showed up within a short amount of time, my morphine allergy prevented them from giving me anything for the pain except nitrous oxide. Inch by inch, they moved me to the gurney. By the time they loaded me onto the ambulance and got me over to the hospital I was delirious.

Once at the hospital, I was given an IV with pain medication. I insisted that they not use adhesives on me, and it was listed on my medical record to not use them at all. I begged for a tourniquet and gauze to hold the IV in place. “Oh, it’s OK,” said the nurse as she taped the IV to my arm, “It’s hypoallergenic tape.” I didn’t have the consciousness about me to rebut her any longer. Next thing I knew, the doctors and nurses were counting to three and they popped my knee back into place. I later learned that my screams could be heard all the way in the lobby, where my roommate and male guest were waiting. The second scream came about half an hour later, when they ripped the tape off my arm. It was then that they discovered just how serious I was about my ‘no tape’ policy. I later told my male guest that he should have come back with me, to translate my persistence into English. He stayed at my house for another two days to make sure I was OK. We watched Monty Python together and he laughed at my Vicodin-induced antics. Two years later we were married.

I can’t wear heels of any form. Most nice flats only last a couple of hours on me before my knees give out, blisters form around the outsides of my feet and my lack of ankle support. I was married in sequined slippers. Thanks to them, I was able to walk down the aisle, dance with my father, husband and Man of Honor. I did the Electric Slide, the Macarena and only remember sitting down for dinner and removal of my garter. I did have some significant trouble moving the next day. We were forced to cut our camping trip short because massive blistering from the stress and activities of the past week and being one with nature do not combine well. But hey, I achieved my goals.

Now, my biggest worry is staph. Since moving to Arkansas in 2005, the heat and humidity have caused it to come more often. In fact, three years ago, my right elbow swelled to the size of a golf ball, I had blistering all up and down both legs, and I was breaking out into cold sweats and shakes. I was placed on Doxycycline, which we quickly discovered I have adverse reactions to. The pain was intense and I was throwing up with violent frequency. A trip to the doctor showed that I was near systemic. I immediately switched antibiotics. The stresses at home and work had impacted me to the point where it made me sick. I was put on an aggressive round of Dicloxacillin and missed a month of work. Finally, while I was still on leave from work, my husband took me on a fishing trip to Southern Missouri. After a few sunny days on the boat, I was feeling much better and my skin almost immediately cleared up. I started searching for another job, but felt that the only thing I could do was more customer service. I would be right back in the same unhealthy position. On the flipside, however, a sitting job was what was best for me. It was a long process of finding exactly the right job.

In February 2009, I had one more foot surgery to remove a spur on my left foot. It was hurting and hindering what ability I had to walk. I was put in a soft cast and was given crutches to use. I couldn’t use the crutches, as they immediately caused severe blistering on my arms and hands, making me even further immobile. The pain caused me to move slowly, thus making it impossible for me to make it to the bathroom, or wherever I had to go and back to my desk in the allotted time I had while working in a call center. In such an environment, any form of tardiness could result in disciplinary action.

One day, still unable to put pressure on my left foot, I attempted to get up from the sofa using only my right foot. My knee slipped out of place and I fell to the ground. Slowly, and in tears, with the help of my husband, I made it back to the sofa. I took another leave of absence and requested approval for a wheelchair. It had been fifteen years since I’d used one and the pushing of a manual chair was causing blisters on my hands. I couldn’t go on like that. I urged approval to go ahead and push me ahead to go into a walking boot as my husband could no longer help me get around. The walking boot, however, was no picnic, either. The constant rubbing on my leg from the walking boot caused blistering that no amount of cloth barrier between it and my leg could prevent. Within four weeks, instead of six, I was out of the boot and walking normally. I still took another two weeks off, however, to ensure my amount of walking was limited and to give myself time to heal from the infection that the boot kindly gave my leg. I was on Ciprofloxacin for two weeks.

Over a year later, however, I was still working for the same company and was taking FMLA leave often. By June of 2010, I was having anxiety attacks combined with uncontrollable infections. My health was my first priority, and taking kratom capsules was the only solution to my anxiety levels. I had to leave. I left my job of five years. I left my mid-range five-figure income and stayed home with my daughter living off of savings. I hadn’t felt so healthy in years.

Since the birth of my daughter, I had been getting inexplicable rashes in random places. They’d appear after wearing fleece, but we ruled it out as being an allergy as I’d also get them after picking her up. They’d erupt late at night. We ruled out detergent and red dye. I’d get them on the tops of my feet. We eventually ruled out my socks. My mother had breakouts as well and she was eventually diagnosed with eczema, which is hereditary. I asked my dermatologist and he confirmed that I had indeed inherited it from her. I had eczema in addition to my EB. The two are treated completely differently and yet, one is always causing an outbreak in the other. Sweating, slight friction and stress cause my eczema to flare. Scratching the resulting hives, more stress and friction causes the rashes to develop into an EB-related mess. Today, it’s a constant mix and careful balance of creams, antihistamines and antibiotics (most of which I’ve become resistant to over the years).

I am working a job that causes significantly less stress and is much more accommodating to my health needs. As an added bonus, I’m working in the field I went to school for again. EB isn’t as much of an issue as it was as a child, obviously, but it’s still hovering above me.

I’ve been looking in to The Manse on Marsh as is the perfect independent living community for any senior. It is an exciting and beautiful community filled with smiling faces, a friendly, passionate staff located directly in the heart of beautiful San Luis Obispo. For added peace of mind, assisted living, hospice care, and many healthcare services are available on campus, now I been taking care in this new senior living lifestyle and I can still go out and be with my family as much as I want.

This past Friday, as a matter of fact, I was on my feet from 6 am to 10:30 pm. I took my daughter to a carnival and though I could feel my feet swell from an erupting blister I let her go on “One more ride, mommy.”. Sometimes the reward of seeing her joy is so worth the sacrifice I make, even if it is painful.

Tomorrow will be my last installment for EB Awareness week… and probably the most emotional journey I had to take on this road to date. Stay tuned, as you’ll notice I left out a pretty significant event in my life in this entry…

Emily was born in Southwestern Louisiana and has moved over 20 times in her life through nine different states. Most of her life was spent in the Twin Cities of Minnesota, where she met her husband and had her only child. Both she and her husband are also only children.

Emily was born with EBS-DM (EB Simplex, Downling Meara), and was in a wheelchair as a result until she was 18. She started improving at around 15, and this is why Kathryn is an only child.

She graduated from Stillwater (MN) High School in 1992 and from the University of Wisconsin in 1997 with a BS in Journalism. Three years later, she met her husband, George, and they married in 2002. Their daughter, Kathryn, was born early in 2004.

She relocated with her family back to Arkansas in 2005 after being away for 30 years. She currently works for the Arkansas Democrat Gazette as a Web Clerk and lives in North Little Rock.

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About Me

My name is Silvia and while I was born and grew up in Italy, I now live in Southern California (USA). I am Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted.
I started this website when Nicky was just an infant because I could not find any information about EB, so anything I came across I posted for the benefit of other parents and it grew from there. I still run this website (and its FB page) because I never stopped looking for information!
For more about me, you may visit my personal blog. Thank You for visiting!

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